Any benefits to taking prednisone 5 mg for long Covid symptoms ?
An immunologist in NYC who works with long Covid patients prescribed prednisone 5 mg for my long Covid 19 symptoms: brain fog, fatigue , joint and muscle pain. I am already on low dose naltrexone (LDN), aspirin 84 mg and statin Lipitor 10mg. She said that all of those drugs can be helpful to address , micro blood clots, chronic inflammation associated with long Covid. Does anyone have experiences with using prednisone 5 mg daily? She also mentioned antivirals like Paxlovid , but stated that there were side effects. A few people on the forum mentioned Adderal for fatigue ? Comments and thoughts greatly appreciated !
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Hello @sbschnell59, I see you've been a member for awhile but this is your first post so I wanted to roll out the welcome mat for you. I'm sorry to hear you have joined the PMR club but really happy that you found relief with the prednisone. There are many discussions on PMR that you might find helpful. Here is a search link that shows the discussions and comments if you want to browse them - https://connect.mayoclinic.org/search/?search=PMR
One of the best suggestions I had from my rheumatologist that diagnosed me with PMR the first time was to keep a daily log with my level of pain (1 to 10) and the dosage of prednisone for the day to help when I started tapering off. Do you keep a daily log?
Thank you for the kind welcome and referral sources. I have been keeping a journal and it helps a lot, I appreciate that. Better days are ahead😉
here's my update - currently taking 15 mg of Prednisone daily. Not really sufficient, but I dont want to push the insomnia. Ive been told I can take up to 20 mg daily. - I finally got in to see a rheumatologist last week for my continual joint pain, and he's tested me for just about everything. All evidence so far is pointing to rheumatoid arthritis, but he is being thorough and we are waiting on a few last tests that take about 2 weeks to process. So, - and Im not sure if Im lucky or not, to not have the mysterious long / post Covid arthritis - what I have may be treatable . Im sort of relieved, after hearing so many stories about the long covid. In my case, its appearing that Covid caused a dormant RA to finally appear.
Hello!Was Hopkins able to help you out at all?I am in the same boat.Muscle pain everywhere,weak ankles and feet.I have had pretty much every test and they only find tiny things.It looks like I have the worse case of arthritis or scoliosis.Random strangers asking if I am o.k. because I can barely walk.I have lost all strength in the trunk of my body too.I have muscle twitching everywhere and asked if it could possibly be ALS and the Neurologists tell me no.I was healthy before all this came on.
I last posted on this forum March 6th and have been waiting a while to post an update on my wife's journey with Long Covid. We were fortunate to find a family doctor locally (our third Dr) that was aware of long covid and had treated some patients and had some success. I will list below the "protocol" he has had my wife follow. Please note, I don't believe there is any "one" answer to long covid, what I am going to cover has helped my wife so it might be something to discuss with your Dr.
1. Saw Dr on 3/26/24 - since our last 7 day trial with Prednisone had indicated some success that was the first thing we asked about. We found out that he had a basic protocol and his first step was to place her on a 27 day predisone taper with the following schedule; 10mg 3 tablets a day for 7 days, 2 tablets a day for 7 days, 1 tablet a day for 7 days and 1/2 a tablet a day for 7 days.
Notes; The diagnosis he actually used was "Postviral fatigue syndrome" which could cover several of the virus's. My wife had never had any side effects from prednisone but did have a few during this treatement schedule and for a couple of weeks afterward as it worked it's way out of her system.
Results; On our next visit with the Dr. we were able to report that the crushing fatigue, PEMS attacks and respitory symptoms were mostly gone. Issues still remaining that had been "minor" before were now at the top of our list. These three items were: Hot/cold flashes (my terminology), brain fog and GI issues.
Next Steps; Dr. prescribed probiotic for GI issues, a prescription supplement called CerefolinNAC for the brain fog and a topical hormone replacement (contained blended Estradiol and Estriol to be applied once in morning and once in evening.
Results; on our next visit we reported the following; GI issues cleared up, hot/cold flashes still occuring, seem to be most prevalent early AM (just prior to waking or shortly thereafter) but not as intense, brain fog still present but she feels it is "better".
Next Steps; Keep up current treatments and add a prescription for topical progesterone to be applied one time at night.
So, is she responding to treatment? The answer is yes with the following data to show improvement. Several months ago we instituted a "rating" system for each day (very simple) of "bad", "medium", "good" that we log every day. Since January the number of "bad" days we logged were as follows;
Jan = 19
Feb = 20
Mar = 25 (started with new Dr. on the 26th)
Apr = 18
May = 8 (note that in the last 20 days of May we have only logged 3 bad days)
Brain fog comes and goes and seems to correlate to stress levels to some degree, hot/cold spells seem to be reducing and the Dr. is hopeful that the new treatment may help her weather the overnight time period and reduce the early AM spells. She is still "weak" but that is to be expected, for almost 2 years she hasn't been able to get much exercise so it will take a while to build back up. We have discussed that at our ages (middle 70's) she may never get completely back to where she was but the improvement she is seeing/feeling has her mood rising significantly.
So, to repeat myself; after reading everyone's stories on this blog site, I don't think there is "one" solution for long covid but we seem to have found one that is working for my wife. We wanted to post this so other folks could ask there Dr. about using this (or some variation) of this type of treatment.
That is Amazing!One of my symptoms was not able to swallow because my muscles in my throat were attacked along with all my other muscles Steroids gave me the ability to eat again.My primary was the one that actually thought to put me on them out of all the specialists I went to.He only had me on a short dosage for a short amount of time though.I am in bad shape so I wonder if he would be willing to put me on them again.Does your wife have heart palpitations?I was reading on another site that the progesterone helped one girl with heart palpitations and weakness.
My wife had some palpitations but they weren't one of her "primary" symptoms. She did have a variety of cardiac screenings during the last couple of years but they all came back negative. The palpitations have ceased to bother her at this time so we are hoping they are a thing of the past.
Very, very impressive and heartening! So glad you shared all this.
So happy for your wife and she is lucky to have you to take care of her. I also believe that treating Covid symptoms is going to be different for every individual. I lost my taste/smell in December of 2022, but after reading a lot of peoples posts on this site, I feel that I am blessed to just have this, but I have to say, I do miss tasting and smelling!
I did 10mgfor 1 week 5 mg 1 week 2.5 mg one week. It helped a lot